Addressing Acromegaly

Acromegaly is a hormonal disorder that develops when the pituitary gland produces too much growth hormone (GH). The overproduction of GH is most commonly caused by a benign (or noncancerous) tumor on the pituitary gland, a pea-sized gland located in the brain. The excess GH leads to the overgrowth of bone and cartilage, creating gradual physical changes in appearance, especially noticeable in the hands, feet and face.

The disorder usually presents in middle-aged adults. It is a rare but serious condition that can affect energy levels, muscle strength, joint and bone health and overall well-being. Early diagnosis and treatment for acromegaly is important because it can lead to serious complications if not treated.

Signs and Symptoms of Acromegaly

One of the most common signs is an increase in shoe and ring size caused by the enlargement of the hands and feet. Facial features change over time (e.g., thick lips, coarse facial features, jutting forehead and jaw, widely spaced front teeth). Other than the more obvious physical changes, it’s important to know that there are other serious signs and symptoms of the disease—these may include:

Numbness or burning of the hands or feet

Carpal tunnel (chronic nerve pain of the wrist)

Sleep apnea due to obstruction of airway (caused by swelling of the soft tissues in this area)

Excessive sweating and skin odor

Fatigue and weakness

Headaches

Impaired vision

Erectile dysfunction in men

Abnormal menstrual cycle and breast discharge in women

Decreased libido

Achy joints or arthritis due to overgrowth of bone and cartilage

Thick, coarse, oily skin

Skin tags

Deepening of the voice

Without treatment, the symptoms usually worsen and may cause other serious conditions including high blood pressure, diabetes, and heart disease. If you experience signs or symptoms of acromegaly, or if you are being treated for acromegaly and your symptoms do not improve, speak with your doctor.

Diagnosing and Treating Acromegaly

Physical changes can occur slowly and may go unnoticed. And so some people can experience acromegaly symptoms for years before getting a diagnosis. Diagnosis involves blood tests and X-ray scans to measure the levels of growth hormone, track bone growth and find tumors. These tests may include:

Serial photos, taken over the years to see physical changes

X-rays, to see bone thickening and changes in the joints

Blood tests, to check the growth hormone level

Head MRI or CT scan, to find the pituitary tumor

In the majority of cases, acromegaly is caused by a tumor in the pituitary gland that secretes either GH alone or GH with other hormones. Treatment usually involves surgery to remove the existing pituitary tumor. Depending on the size and location of the tumor, a surgical cure may be possible. Unfortunately, not all tumors can be taken out completely. There is also a chance that the tumor can return. Medications can also be used to block the secretion of GH, or to reduce and/or counter the effects of GH. Radiation therapy is sometimes used as well.

With these treatments, hormonal disease control is often achieved. However, even if people with acromegaly are surgically cured or their symptoms are well-controlled, joint pain, deformities and altered quality of life may remain.

Also, keep in mind that a treatment regimen that might be effective for one person with acromegaly may not be effective for all people with acromegaly. Treatment is individualized so it’s important to work closely with your healthcare team.

Living with Acromegaly

Life when you have a chronic disease can be challenging, not just physically but also mentally and emotionally. Here are a few things to keep in mind:

You are not alone. Though acromegaly is a rare disease, it is estimated that about 60 out of every million people worldwide are living with the condition.

Educate yourself and others around you. Becoming more knowledgeable about the disease may help you feel more empowered in the management of your condition and addressing misconceptions or stigma about the disease.

Talk about it. If you have acromegaly, it’s important to communicate your feelings about it. Managing any chronic disease can be stressful. Also, remember that people who live with chronic illnesses are more prone to depression. Be sure to speak to your doctor if you struggle with feelings of depression.

Join a support group. It may help to connect with other people with acromegaly. Acromegalycommunity.com is one such resource offering support groups for those living with the disease.

Keep up with your doctor appointments. Acromegaly is a lifelong condition and requires ongoing care. Speak to your healthcare team (e.g., doctor, pharmacist, nurse) about any changes in your condition or the medications you take. Share any concerns or questions you may have—you are not complaining. Your healthcare team is there to help you.